miracle ?mirik?l
nouna surprising and welcome event that is not explicable by natural orscientific laws and is therefore considered to be the work of a divineagency : the miracle of rising from the grave. a highly improbable or extraordinary event, development, or accomplishment that brings very welcome consequences : it was a miracle that more people hadn’t been killed or injured [as adj. ] : a miracle drug.
What do I know, but I’m guessing the Pediatric ICU isn’t cavalier with it’s use of the word “miracle”. Afterall, saving lives is what they do. But when we paraded out of the PICU with packed wagons, adorned with balloons and a zoo of stuffed animals, the nurses and doctors gathered to watch us leave, many of them calling Tuesday a miracle. After witnessing her last month, there is no doubt in our minds that she is a miracle.What exactly was going on with Tuesday this past month, you ask? Let’s see if I can put it in to words.
* Spent the weekend in the ER after her pediatrician was unable to get an accurate blood count.* Diagnosed with Autoimmune hemolytic Anemia and sent to Children’s hem/onc clinic.* Hem/Onc appt. Diagnosis changed to Neuroblastoma. What the hell is Neuroblastoma?* Checked in to Oncology in-patient.* Surgery to do biopsy, bone marrow aspiration and put in a broviac central line.* During surgery they find that the “enormous” tumor growing on her adrenal gland has started to die off and she begins bleeding in to the tumor. Never really recovers from surgery. Still concerned about internal bleeding because her red blood counts keep dropping. This begins the start of blood transfusions.* Testing for accurate diagnosis and staging continues. CT scan. MIBG. Bone scan. * Because of the size and location of the main tumor, Tuesday’s lungs are squished and she is unable to breath well on her own. Moved to Pediatric Intensive Care Unit. * Start round one of chemotherapy in PICU. * Tuesday is still having bleeding in to the tumor and starts to 3rd space fluids in to her tissues. * Chemo continues. Tuesday is now 6+ liters positive in fluids and begins to resemble Chunk from The Goonies.* Lungs fill with fluid. Put on the High Frequency Oscillator Vent which requires her to be paralyzed.* Her CO2 levels continue to be dangerously high. * Talks with surgery about putting in drains to help with fluids in her lungs. * Talk of “compartment syndrome” (you don’t even want to know the fix for this problem)* Begins forming mini clots in her organs. Put on an experimental study of low dose Heprin.* Her ANC (formulation of white blood cell counts) begins to climb back up. * After 9 days on the Oscillator, nine days of hell, she goes back on the conventional vent. * Count recovered. Starts to heal. Starts to fight the vent. Mom starts to fight to docs. Finally, all agree that we need to give Tuesday a shot at breathing on her own.* Starts cycle 2 of chemotherapy while still on the vent.* 30 days in the PICU, Tuesday is extubated and put on Bi-pap. (think sleep apnea machine) HATES IT.* Off Bi-PAP. Her O2 and CO2 levels are better than when ventilated. Put on a small amount of O2.* Discharged from PICU! Unfortunately there is no room on Oncology.* After 33 days in the PICU we transfer back to Oncology.
So there you have it. God was busy this month. The night after Tuesday was taken off the vent, I was holding her and we just stared at each other. I asked her if Angels had been watching over her and these huge tears started rolling down her cheeks. I can only tell you that the look on her face told me I didn’t know the half of it. Thanks be to God.Thanks to the amazing nurses in the PICU that cared for and cared about our baby. Thanks to the doctors who each played an integral part in her recovery.Thanks to all of you who have and who continue to pray for Miss Tuesday.We are humbled and honored at the outpouring of love. How blessed we are to know so much love.
Oh Jess! This was just beautiful!
Your little girl is such a blessed child! God has such great plans for her. I just KNOW it.
She is a miracle and we are all getting the oppurtunity to witness God's amazing grace through her.
Much love & prayers always!
Still praying for her and all of you. Beautiful post.
Keep fighting little Tuesday. You got the whole world waiting on you.
JK – what a beautiful update. We’re so thankful to hear Tuesday is doing so well. She is truly a miracle and we’re so blessed to know you and your family. Thanks be to God. Tell Tuesday to keep truckin’, and we’ll keep prayin’.
Love you guys!
the Janstas
Since receiving your email Tuesday has been in my prayers. Miracle…it is the most beautiful word.
Still praying…with a smile after reading this update.
We have been praying & will continue to pray for Miss Tuesday & your entire family. What a miracle she is! You've got a very strong, brave little girl & I just know she will do great things in her life. Amen for such good news!
Oh if I could stop crying for one minute so I could see to type this that would be great. π I truely believe that Tuesday IS INDEED a MIRACLE! She continues to surprise the doctors (and all of us and you I’m sure) and I’m sure she will continue to do miraculous things!!
Love, kisses and prayers being sent your way ALWAYS!
Christy
Thanks so much for including us via blog updates. I just can’t even imagine what it’s been like for all of you. We check every day for good news and are so happy and thankful that things are getting easier and Tuesday is getting better. Your beautiful little girl truly is a miracle. We will keep praying for all of you this day and every day and look forward to the day she is home again.
Julie, Rachel and Sara
I am not sure how I missed this post until now! wow! What an long journey she has been on. Angels are watching over her. And you! What a little miracle!!
Awesome story JK. Its hard to read through the tears of happiness that I have. Everyone I know is still praying for Tuesday!!! Me included!!
I knew it all but seeing it written makes it all the more unbelievable. I told you I felt the angels in that room. Tuesday obviously knew they were there too. Thank you for your beautiful words.
Sharing a cheekful of empathy tears for you and Tuesday. Praying and will continue to. You DO have a BIG miracle in small Tuesday’s body. π
We are all so happy that she is so much better, GOD is GREAT,
I can’t even begin to fathom what your family is going through right now, but wanted you to know that there are many people in this world praying for your little girl!!!!
I pray that each day finds her healing more and more.
I am continuing to pray for your entire family. I lost both of my parents to cancer, and I am asking them to help watch over her. God Bless you all!
Thank you so much for sharing this. While my heart aches for all you guys had to go through this past month, it is also filled with joy for the blessings, and yes MIRACLES! that have already been performed for Tuesday! I especially loved the part about the angels. I especially thank you for sharing that π
miss tuesday is an amazing little girl and i know she will to continue doing great. it was a preasur to have met you cahrlie and wonderful tuesday! i pray for her daily and i just know that with the turn around i saw, she will prevail
What a beautiful post and an awesome miracle!!! I hope this is one of many more positive updates to come for Tuesday!
Speechless, love you guys and am so thankful to God!
JK — The image of you holding Tuesday in your arms and asking her about the angels…there are no words. I will carry that image with me for a very long time. The praying continues every single day, my dear. You guys are in my heart.
OK…I’m bawling now. I just can’t imagine looking into her eyes and seeing my child just look back at me and cry. Oh JK, I want to meet Tuesday. What a blessing. I’m so happy you are out of that miserable PICU!
You are truly an amazing mother, writer, and friend. Tuesday is always in our prayers, and will continue to be. She is a miracle and will continue to baffle the docters with her strength and her will to fight!
Love and prayers,
The Briggs Family
As if my computer key board hasn’t had
enough moisture spilled on it this past few
months!
So cathartic to read your touching synopsis of our
family’s Twilight Zone episode, lo these many weeks.
What joy to see our Toosie smiling again.
Thank you Lord!
Grammy L
I have been reading your blog and I am just in aww of you and your entire family…you are all so strong, and I think the strongest one was little Tuesday! I am so sorry for your loss and I just want you to know that I never met you or Tuesday but you are in my heart to stay!
I can’t read through one post of yours of Tuesday without crying.
She has effected my life beyond explination, and I never got the chance to meet her, or any of your family.
I know she’ll stay in my heart – and many others reading from around the world.
Thank you for sharing her story. I strongly believe every person has a place on this earth – has a reason for being here and hers is amazing.